By Learn Advocate Connect Neuroendocrine Tumor Society
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The podcast currently has 39 episodes available.
What is supportive care or supportive oncology? What is cancer-related distress? How might NET patients benefit from supportive care? Yale oncologist Dr. Maryam Lustberg suggests strategies to manage cancer-related fatigue, diarrhea, nausea, mouth sores, peripheral neuropathy, distress, anxiety, and anxiety. She also addresses considerations for fertility and sexual health.
MEET DR. MARYAM LUSTBERG
Dr. Maryam Lustberg is an American breast oncologist. She is the Director of The Breast Center at Smilow Cancer Hospital and Chief of
Breast Medical Oncology at Yale Cancer Center. Dr. Lustberg previously served as the Medical Director of Cancer Supportive Care Services at
Ohio State’s Comprehensive Cancer Center. She is the Immediate Past President of the Multinational Association of Supportive Care in Cancer. She is also an Associate Editor for the Journal of Cancer Survivorship.
TOP TEN QUESTIONS ABOUT SUPPORTIVE CARE:
For more information, please visit https://www.lacnets.org/podcast/37.
For more information, visit LACNETS.org.
ABOUT THIS EPISODE
What is immunotherapy? How effective are they for neuroendocrine neoplasms (NENs)? Dr. Jennifer Eads from Penn Medicine answers common questions about immunotherapy. She discusses the latest in CAR T therapy, DLL3, and vaccine therapy for NENs.
TOP TEN QUESTIONS ABOUT IMMUNOTHERAPY FOR NENS:
MEET DR. JENNIFER EADS, MD
Dr. Jennifer Eads is an associate professor of medicine at the University of Pennsylvania, Abramson Cancer Center where she is a gastrointestinal medical oncologist focusing on the treatment of and research in patients with neuroendocrine tumors and gastroesophageal cancers. She is the Physician Lead for GI Clinical Research, overseeing the Penn GI clinical research portfolio. She is the Penn institutional principal investigator for the Eastern Cooperative Oncology Group (ECOG-ACRIN) and serves as the Director of the National Clinical Trials Network (NCTN) for the Abramson Cancer Center. She has served as principal investigator for multiple phase I/II/III clinical trials, including as the national study chair for multiple cooperative group trials. She has served on the National Clinical Cancer Network (NCCN) neuroendocrine tumors guidelines committee, is a former member of the North American Neuroendocrine Tumor Society (NANETS) Board of Directors and is currently on the Board of Scientific Advisors for the Neuroendocrine Tumor Research Foundation (NETRF). In 2022, she was named as the ECOG-ACRIN Young Investigator of the Year.
For more information, visit lacnets.org/lacnets-podcast/36
For more information, visit LACNETS.org.
What is chemotherapy? When are they used for neuroendocrine neoplasms (NENs)? Dr. Pamela Kunz from Yale Medicine discusses the benefits, potential side effects and latest advances in chemotherapy for NENs. She explains how it differs from other treatments for NENs and how she counsels patients as they consider chemotherapy.
TOP TEN QUESTIONS ABOUT CHEMOTHERAPY FOR NENS:
MEET PAMELA L. KUNZ, MD
Dr. Pamela Kunz is an Associate Professor of Medicine in the Division of Oncology at Yale School of Medicine where she also serves as the Director of the Center for GI Cancers and Division Chief of GI Medical Oncology at Yale Cancer Center and Smilow Cancer Hospital. She received her medical degree from the Dartmouth Geisel School of Medicine. Her postgraduate training included a medical residency, chief residency, and oncology fellowship at Stanford University School of Medicine.
Dr. Kunz is an international leader in the treatment and clinical research of patients with GI malignancies and neuroendocrine tumors (NETs). She holds several key leadership positions in the field including President Emeritus of the North American Neuroendocrine Tumor Society, recent past Chair of the Neuroendocrine Tumor Taskforce of the NCI and standing member of FDA’s Oncology Drug Advisory Committee. She was recently appointed Editor-in-Chief of JCO Oncology Advances. In addition to her focus on NETs, she is a leading voice for promoting diversity, equity and inclusion in medicine. She served as the Vice Chief of DEI for the Section of Medical Oncology at Yale School of Medicine and in 2021, she was awarded ‘Woman Oncologist of the Year’ by Women Leaders in Oncology for her work in promoting gender equity.
For more information, visit LACNETS.org.
What is PRRT? How is it different from the more commonly used radiation treatment? What are the possible side effects? Dr. Riham El Khouli from the University of Kentucky in Lexington discusses common questions and concerns about PRRT and shares some of the latest advances.
MEET DR. RIHAM EL KHOULI, MD, PHD
Associate Professor of Radiology, UK College of Medicine
Chief, Division of Nuclear Medicine/Molecular Imaging & Radiotheranostics (NM/MI&R)
Director, Radiotheranostics Program
University of Kentucky
Dr. Riham El Khouli, MD PhD, is the director of the Radiotheranostics program and Chief of the division of NM/MI&R at the University of Kentucky and an Associate Professor of Radiology, Nuclear Medicine and Molecular Imaging at UK school of Medicine.
TOP TEN QUESTIONS ABOUT NET TREATMENTS:
1. What is PRRT? How does it work?
2. What is theranostics and what does it mean? What are the terms radiotheranostics, radiopharmaceutical, radioligand therapy, PRRT?
3. How do you determine who is eligible for PRRT?
4. When is PRRT given in one’s treatment journey?
5. How does PRRT differ from other treatments?
6. What are the common side effects of Lutathera?
a. Does Lutathera have long-lasting effects?
b. Would receiving Lutathera affect one’s blood counts?
c. How might Lutathera affect one’s liver function? When, if ever is there concern about liver failure?
7. How might PRRT affect my quality of life and my day-to-day ability to work and function? What is the risk and effects of radiation with receiving Lutathera?
a. What precautions do I need to follow?
b. Can I hug my child? Can I pet my dog?
c. Would receiving Lutathera cause someone to be immunocompromised?
8. How to you decide who should get PRRT?
a. What is peritoneal disease and how effective is PRRT with peritoneal disease?
9. How do you assess the response to PRRT?
10. What advances in PRRT are you most excited about?
Visit https://www.lacnets.org/podcast/34.
For more information, visit LACNETS.org.
ABOUT THIS EPISODE
What are Targeted Therapies and how do they work? How and when would they be used in NETs? Dr. Scott Paulson from Baylor Cancer Center in Dallas discusses common questions and concerns about targeted therapies including side effects, dosing and treatment sequencing. Bonus: Dr. Paulson shares how we can learn from Harry Potter’s invisibility cloak in understanding treatment goals with NETs.
MEET DR. SCOTT PAULSON
Dr. Paulson is a medical oncologist and the medical director for the Neuroendocrine Research and Treatment Center at Baylor Charles A. Sammons Cancer Center in Dallas, Texas. He also serves as the co-director of the Gastrointestinal Research Program for the Sarah Cannon Research Institute.
Dr. Paulson earned his medical doctorate at The University of Texas Southwestern Medical School. He took his residency and an internship in internal medicine at Brigham and Women's Hospital in Boston, Massachuests. His fellowship was completed in medical oncology at the University of California, San Francisco.
Dr. Paulson is active in clinical research focused on neuroendocrine tumors as well as cancers of the pancreas, liver, esophagus, stomach, and colon. Dr. Paulson is active in clinical research focused on neuroendocrine tumors as well as cancers of the pancreas, liver, esophagus, stomach, and colon. He currently is an investigator on a clinical trial studying nab-sirolimus, a mTOR inhibitor, which is a type of targeted therapy.
TOP TEN QUESTIONS ABOUT TARGETED THERAPIES FOR NETs:
1. What are targeted therapies? Are they considered chemotherapy? How do they work?
2. What are the different types of targeted therapies for NETs?
3. When and how are targeted therapies used?
4. What side effects might someone have when taking a targeted therapy?
a.Can targeted therapies affect blood sugars or cause diabetes?
b. Can targeted therapies cause one to be immunocompromised?
c. Can targeted therapies affect one’s blood counts?
5. What is the goal of treatment with targeted therapies? (Why would one take these drugs given the potential side effects? Can the side effects be managed?)
6. How do you decide which targeted therapy to recommend for a patient?
7. Can a NET patient take more than one drug in this category? Can the medications be stopped and restarted?
8. What is your approach with dosing?
9. What is your approach with monitoring? What and how often do people need blood work?
10. Does taking a targeted therapy preclude someone from getting another treatment in the future, such as Lutathera/PRRT, or a clinical trial of alpha PRRT?
BONUS: What are the latest advances in targeted therapy? What is the future of targeted therapies?
For more information, please visit https://www.lacnets.org/podcast/33.
For more information, visit LACNETS.org.
How do SSAs work? Should all NET patients be on one? What are the side effects? Dr. Edward Wolin from Mount Sinai Health System answers several common questions about the current and future role of somatostatin analogues in NET treatment.
MEET Dr. EDWARD M. WOLIN
Professor of Medicine, Medical Oncology, Icahn School of Medicine Director, Center for Carcinoid and Neuroendocrine Tumors Tisch Cancer Institute, Mount Sinai Health System
Dr. Edward M. Wolin is an internationally renowned authority on neuroendocrine tumors. Dr. Wolin is the Director of the Center for Carcinoid and Neuroendocrine Tumors at the Tisch Cancer Institute at Mount Sinai and Professor of Medicine, Medical Oncology at the Icahn School of Medicine at Mount Sinai.
The multidisciplinary Center for Carcinoid and Neuroendocrine Tumors features a robust research program with clinical trials aimed at finding the most effective treatments, including immunotherapy, biologic agents, targeted radiation therapy, and new approaches in molecular imaging for diagnosis. Dr. Wolin has pioneered innovative therapies with novel somatostatin analogs, mTOR inhibitors, anti-angiogenic drugs, and peptide receptor radiotherapy.
Prior to joining Mount Sinai, Dr. Wolin was Director of the Neuroendocrine Tumor Program at Montefiore Einstein Cancer Center. Previously, he worked for more than two decades with Cedars-Sinai Medical Center in Los Angeles, where he founded and directed one of the largest Carcinoid and Neuroendocrine Tumor Programs in the country, and subsequently directed the Neuroendocrine Tumor Program at University of Kentucky. Dr. Wolin is also the Co-Medical Director for the Carcinoid Cancer Foundation and is on the Carcinoid Cancer Research Grants Scientific Review Committee for the American Association for Cancer Research. He has published in many prestigious journals, including the New England Journal of Medicine and Journal of Clinical Oncology, and is a reviewer for numerous journals, including Journal of Clinical Oncology, Molecular Cancer Therapeutics, Clinical Cancer Research, and The Lancet Oncology.
During Dr. Wolin’s two decades at Cedars-Sinai Medical Center in Los Angeles, he developed a close friendship with LACNETS founder Giovanna Joyce Imbesi. Dr. Wolin was instrumental in the co-founding and development of LACNETS. LACNETS has always been very dear to his heart and he cherishes and honors the memory of Giovanna.
Dr. Wolin earned his medical degree from Yale School of Medicine. He completed both his residency in internal medicine and fellowship in medical oncology at Stanford University Hospital. He was also a clinical fellow at the National Cancer Institute of the National Institutes of Health. Dr. Wolin is board certified in internal medicine and medical oncology.
TOP TEN QUESTIONS ABOUT SOMATOSTATIN ANALOGUES (SSAs) FOR NETS:
1. What are somatostatin analogues (SSAs)? How do they work?
2. When and how are SSAs used?
3. Which SSA should a patient be on? What is the difference? How do you decide?
4. How do you know if a SSA will be helpful? Should ALL NET patients be on a SSA?
5. What about patients whose tumors don’t “light up” on a DOTATATE scan?
6. How long can someone stay on a SSA?
7. What side effects may patients experience from the shot? What can patients do to prevent or manage these symptoms? How might it affect one’s day-to-day ability to work and function? Can I live a “normal life” while taking this medication?
8. If the tumor is growing does this mean the SSA did not work? Do you continue it when patients are treated with another treatment? When do you stop a SSA?
9. What is the future of SSAs? I heard there is a pill that is available in a clinical trial. Ca
For more information, visit LACNETS.org.
In this two-part series, we reprise “Navigating Clinical Trials: Expectations vs. Realities” with Taymeyah Al-Toubah. This was previously broadcast on August 19th, 2023, as a LACNETS monthly educational webinar. In Part 1, Taymeyah discusses clinical trial terminology, timeline, questions to ask, and misconceptions. In Part 2, Taymeyah answers questions about logistics and practical aspects of clinical trials, such as costs, response time, and follow-up. She also answers frequently asked questions about PRRT trials, including alpha trials.
MEET TAYMEYAH AL-TOUBAH, MPH
Taymeyah Al-Toubah is a clinical researcher, currently at Moffitt Cancer Center, who has been in the research field for 10 years. She began her career in 2013 while obtaining her bachelor’s degrees in biomedical sciences and psychology, working in pediatric and neonatal research at Johns Hopkins All Children’s Hospital. In 2016, she shifted her career focus to oncology, beginning with phase I trials and working in all solid tumors. She completed her Master of Public Health in Epidemiology in 2017 and focused her graduate thesis on neuroendocrine tumors. In 2018, she switched departments to focus exclusively on NETs.
From 2018 – 2023, she was the primary NET coordinator in the GI department, managing all clinical trials while leading the GI team, managing the NET clinic coordination amongst the ancillary departments, and working on all retrospective and non-interventional NET research. She has worked on protocol development, database analysis, and manuscript writing, resulting in over 30 published manuscripts and presented her research at several national and international oncology and NET conferences, with oral abstracts at several ENETS and NANETS conferences.
In April 2023, she formally transitioned to a new position as a project manager of the NET program, where she will continue to mentor new coordinators while working on protocol development and writing, manuscript writing, non-interventional clinical trials, and retrospective NET research. One of her first major projects will be to curate and develop a master database of all NET patients seen at her institution that will provide the basis for all future NET research to be published at Moffitt.
She is currently on the board of one of the first NET patient advocacy groups in Florida (FLaNET Carcinoid Community), which kicked off alongside the Tampa Regional NANETS meeting in November 2022. She is an active member of NANETS on the Continuing Education and Symposium Planning committees.
She plans to dedicate the remainder of her career to this disease and community. Her ultimate plan is to attend medical school, specialize in medical oncology, and continue to serve the academic NET community and patient base as a physician and clinical investigator.
For more information, visit LACNETS.org.
In this two-part series, we reprise “Navigating Clinical Trials: Expectations vs. Realities” with Taymeyah Al-Toubah. This was previously broadcast on August 19th, 2023, as a LACNETS monthly educational webinar. In Part 1, Taymeyah discusses clinical trial terminology, timeline, questions to ask, and misconceptions. In Part 2, Taymeyah answers questions about logistics and practical aspects of clinical trials, such as costs, response time, and follow-up. She also answers frequently asked questions about PRRT trials, including alpha trials.
MEET TAYMEYAH AL-TOUBAH, MPH
Taymeyah Al-Toubah is a clinical researcher, currently at Moffitt Cancer Center, who has been in the research field for 10 years. She began her career in 2013 while obtaining her bachelor’s degrees in biomedical sciences and psychology, working in pediatric and neonatal research at Johns Hopkins All Children’s Hospital. In 2016, she shifted her career focus to oncology, beginning with phase I trials and working in all solid tumors. She completed her Master of Public Health in Epidemiology in 2017 and focused her graduate thesis on neuroendocrine tumors. In 2018, she switched departments to focus exclusively on NETs.
From 2018 – 2023, she was the primary NET coordinator in the GI department, managing all clinical trials while leading the GI team, managing the NET clinic coordination amongst the ancillary departments, and working on all retrospective and non-interventional NET research. She has worked on protocol development, database analysis, and manuscript writing, resulting in over 30 published manuscripts and presented her research at several national and international oncology and NET conferences, with oral abstracts at several ENETS and NANETS conferences.
In April 2023, she formally transitioned to a new position as a project manager of the NET program, where she will continue to mentor new coordinators while working on protocol development and writing, manuscript writing, non-interventional clinical trials, and retrospective NET research. One of her first major projects will be to curate and develop a master database of all NET patients seen at her institution that will provide the basis for all future NET research to be published at Moffitt.
She is currently on the board of one of the first NET patient advocacy groups in Florida (FLaNET Carcinoid Community), which kicked off alongside the Tampa Regional NANETS meeting in November 2022. She is an active member of NANETS on the Continuing Education and Symposium Planning committees.
She plans to dedicate the remainder of her career to this disease and community. Her ultimate plan is to attend medical school, specialize in medical oncology, and continue to serve the academic NET community and patient base as a physician and clinical investigator.
For more information, visit LACNETS.org.
When and how often do NETs spread to the bones or brain? How are they found? What is the treatment? Dr. Robert Ramirez of Vanderbilt University addresses concerns surrounding bone metastases (or “mets”) as well as rare brain metastases.
MEET DR. ROBERT RAMIREZ, DO, FACP
Dr. Robert Ramirez is a medical oncologist specializing in the treatment of thoracic and neuroendocrine malignancies and an Associate Professor of Medicine at Vanderbilt University Medical Center in Nashville, TN. He earned his medical degree from the University of Medicine and Dentistry of New Jersey School of Osteopathic Medicine. He completed an internal medicine residency at Cooper University Hospital in Camden, New Jersey. He then completed a hematology and medical oncology fellowship at the University of Tennessee Health Sciences Center in Memphis, Tennessee and served as chief fellow. He is a Fellow of the American College of Physicians, and a member of American Society of Clinical Oncology, the International Association for the Study of Lung Cancer (IASLC), and the North American Neuroendocrine Tumor Society (NANETS). He serves on the Board of Directors for NANETS as well as the Scientific Review and Research Committee.
His clinical and research interests include neuroendocrine tumors (NETs) and lung cancer. He has a specific interest in NETs of the lung ranging from diffuse idiopathic pulmonary neuroendocrine tumor cell hyperplasia (DIPNECH) and carcinoid tumors to small cell lung cancer and other high-grade neuroendocrine carcinomas. He is active in clinical trial design including investigator-initiated trials. He enjoys teaching residents and fellows and has multiple publications and given many lectures for the scientific community on the topics of NETs and lung cancers.
TOP TEN QUESTIONS
Bone mets:
1. When and how often do NETs spread to the bones?
2. Where in the bones are tumors? What does it mean when NETs spread to the bones? How does this compare to other cancers?
3. How are bone spots found and monitored? Should they be biopsied?
4. What is the treatment for bone mets? Should I have radiation? Would radiation limit my ability to get PRRT?
5. Should I be on bone strengthening medication? Am I at higher risk for fractures (or breaking my bones) if I have NETs in the bones?
6. Do bone mets respond to PRRT?
7. Does having bone mets put me at a higher risk of MDS?
Brain mets:
8. When and how often do NETs spread to the brain? Do all types of NETs have the potential to spread to the brain?
9. How are brain mets found and monitored? When should I suspect this?
10. How are brain mets treated? What does having brain mets mean for my life?
*Bonus: What final words of hope do you have for the neuroendocrine cancer community?
For more information, visit LACNETS.org.
NET dietician Sina Teskey from the Medical College of Wisconsin answers common questions about diet and nutrition raised among NET patients and caregivers. She addresses special diets, food restrictions, and whether sugar “feeds” cancer. Sina also speaks to diarrhea, and digestive enzymes and shares tips on how to maintain nutrition and weight.
MEET SINA TESKEY, RD, CD
Sina Teskey, RD, CD received her B.S. from the University of Wisconsin-Madison in 2006 and completed her dietetic internship at the University of Minnesota Medical College-Fairview in 2007. She has spent most of her career working with cancer and eating disorder patients. Sina practiced in the Twin Cities area for 10 years where she also spent time guest starring on a local TV show called Twin Cities Live to share nutrition advice.
She moved to Milwaukee and has worked at Froedtert Hospital and the Medical College of Wisconsin since 2018. Sina sees all patients with cancer but specializes in GI cancers and neuroendocrine tumor patients. When she’s not working, Sina is a mom to three kids and a Labrador retriever. She loves to cook and bring people together with food. Her youngest son was diagnosed with non-Hodgkin’s Lymphoma in 2019. His cancer journey gave insight into what having cancer means to a family and has impacted her practice profoundly. Her son Milo is now 7 years old and in remission.
TOP TEN QUESTIONS
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For more information, visit LACNETS.org.
The podcast currently has 39 episodes available.
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